Friday, February 26, 2016

In June, 2015, right around the time my book Who Gets What and Why was published, Steven Dubner and his team at Freakonomics published a podcast called Make Me a Match, in which he interviewed me and others about kidney exchange, among other things. Now, in a new podcast, Dubner interviews a listener named Ned Brooks who was inspired by that interview to become a non-directed kidney donor and start a kidney exchange chain. In fact, not only does Dubner interview the donor, he interviews the woman who received his kidney, and in fact introduces the two of them for the first time. Pretty dramatic stuff.

Here's the link to the podcast, where you can (both) listen to it and read the whole transcript.

Below is the part of the transcript that has to do with kidney donation and transplantation. If you read it through, I predict you'll be moved (at one point Dubner says he's crying, so at least he was moved), and if you get to the end you'll find out about a new organization that Brooks has established to help find new donors for people who need them.

"Let me introduce you now to Ned Brooks.

DUBNER: Ok. Hello, Ned?

NED BROOKS: Stephen, how are you?

DUBNER: Hey! Great, how’re you? Nice to meet you.

BROOKS: Nice to hear you.

DUBNER: Thanks for doing this, the interview, but doing the actual deed.

BROOKS: It was a very easy thing to do.

Ned Brooks is 65 years old.

BROOKS: I live in Norwalk, Connecticut. I’m semi-retired after a couple of careers, on Wall Street and in real estate.

He’s been married for 34 years. Three grown children. One day last year, Brooks was in his car.

BROOKS: And we were listening to your podcast about Alvin Roth, the Nobel Prize winner in economics who created a model to trade indivisible items without the use of money. And I think he was talking about houses at the time, but it seems to work very well for the kidney chain as well.

The episode was called “Make Me a Match.” Al Roth was describing how he and others had created a series of algorithms that helped match people in need of a kidney transplant with potential donors

BROOKS: And I listen to the podcast with growing interest because what came through to me about the power of the kidney chain, as somebody with a business background, is the concept of leverage. That one altruistic donor — and an altruistic donor is someone who gives a kidney without having anybody particular in mind to receive it. And it provides a lot of options for the people who put these things together, to start a kidney chain. And that results in a sequence of transplants that can affect a lot of people.

DUBNER: Now, have you ever considered giving a kidney before then?

BROOKS: No, no I did not.

DUBNER: And what was it about, about the message from Al Roth in that podcast that either, kind of, alerted you? What did you learn, or what changed your mind that made you start to think about that, then?

BROOKS: Well, the concept that we have two kidneys and we only need one.

DUBNER: Now did you know that ahead of time, or not really?

BROOKS: Yes, I did know that much. What I did not know is all the benefits that accrues to one who donates a kidney. The process is lengthy in terms of the amount of testing that you go through to do so. But …

DUBNER: Now, you’re saying that the medical tests were the benefits?

BROOKS: Oh, absolutely.

DUBNER: I just want to clarify here.

BROOKS: Absolutely. Look, you get many thousands dollars of testing for free.

DUBNER: Can I just say something, Ned? I think you and I are fundamentally different people, because if I were going to get several thousands of dollars worth of something free I would want it to be, you know, golf, or something, fishing boat. Not medical testing, but tell me more about your great desire …

BROOKS: Well, you’re not 65, and knowing that all your organs are free of any contaminants is a very reassuring thing, actually.

Let me be clear. It wasn’t really all the free medical testing that made Brooks want to become a kidney donor.

BROOKS: I think this is something I have to do. It required some thought, discussion with my wife that day in the car. I spent one restless night, probably about three hours trying to understand what my own motivations were and if they were the right ones to be doing this. And once I put that to rest, then it was a very easy thing to do.

DUBNER: Did you decide immediately to become a non-directed donor? Meaning that your kidney would be available for anyone who needed it? Or, did you think about trying to help someone in particular?

BROOKS: As great as it would be to help someone in particular, I didn’t know anyone who needed a kidney. And in fact, the leverage comes from being an altruistic donor. You can’t start a kidney chain unless you’re altruistic about it.

DUBNER: Let’s say I need a kidney and my wife is willing to donate or someone else in my family is willing to donate, but they’re not a match. They’re not a physiological match for me. But they would donate a kidney of theirs to someone else who is a match. They then enter the chain, correct?

BROOKS: So, call them “Couple A.” And Couple B is in the same situation as is Couple C, D, down the line.

DUBNER: But then there is this wildcard, X, that’s you. This guy who comes in that doesn’t have anyone that needs one, that just wants to give. Does that make you much more valuable?

BROOKS: That makes me valuable because it allows the algorithm to maximize the length of the chain and kick it off. If you didn’t have the altruistic donor to start, you’d have to have a perfect match.

DUBNER: Talk about the procedure, working with the hospital, and talk about how the relationship works so that you are not made to feel that you’re being pressured.

BROOKS: Sure. In my case, I had the operation done at New York-Presbyterian. And I chose New York-Presbyterian because they do a lot of these operations. And I think that with any surgery like this you want to go to a place that does a lot of them. And so I was very comfortable with their record. They’ve never lost a donor yet. They provide you with two advocates. And those advocates are there to protect your interest throughout the process. And you go in for testing, you do it through your advocate, you go in for psychological testing, physical testing. They want to make sure you are financially able to this, because, of course, you cannot be compensated for a kidney donation.

DUBNER: To what degree did they push back? In other words, to what degree did they try actively to discourage you or at least make you take a step back and think it through a little bit more?

BROOKS: They didn’t actively discourage me. The psychiatrist probed quite a bit. But after I seemed to have satisfied her on the answers, that was the end of it. What they will not do is they will not come after you to keep you coming to hospital for every procedure that needs to be done. In other words, they set the time and the date for your next appointment, and they won’t call you. It’s up to you to make sure that you’re there.

DUBNER: Oh that’s interesting, yeah. And at no point did they catch on to the fact that you were just in it for the free medical testing?

BROOKS: Actually, actually yes. The doctor I spoke with there said, “This is a little-known secret, but the testing is so good that everyone should at least start out to be a kidney donor and find out how their tests go.”

DUBNER: That is a secret that I’m guessing they really don’t want broadcast. Because I can see an army of senior citizens flooding in for their tests saying, “You know, I think I’m going to hang on to this — to the other kidney.” And then talk to me about your family’s response. Was everyone on board?

BROOKS: My wife was supportive. As I said, I have three children. One was very supportive, one was skeptical, and one was opposed. And I guess that’s what you get when you get three children. But the skeptical one, and the one who was opposed, turned around once they felt like they got a lot more facts about it. It’s a very safe procedure relative to surgery, in general. And once they understood that, then I think their reservations went away.

DUBNER: I understand you wrote a letter to your family when you had gotten pretty far along in the process. By then you’d undergone some of the testing?

BROOKS: Yes, yes.

DUBNER: Do you happen to have that letter handy?

BROOKS: Actually, I do have it here.

DUBNER: If you don’t mind giving that a read, that would be great.

BROOKS: Sure. This is a letter that I wrote to my family when I realized that it was what I wanted to do, and I wanted to inform them all at the same time. So, I sent them an email and it goes like this:

All, as you have commented upon, I have had a number of medical tests over the summer. I did not fully answer your questions about those because I wanted to wait until I had cleared all the tests. I’m happy to report that I’m about as healthy as is possible for a 65-year-old male to be.

Back in the spring, I was listening to a Freakonomics podcast about a man who won the Nobel Prize in economics for constructing a model of a market to trade indivisible objects without the use of money. He was thinking about houses, but it turns out that the model works very well for other things. His work had been used to create an extensive network for the matching of kidney donors and recipients. The more I listened to the podcast, the more fascinated I became as I learned that just one altruistic donor — a person who donates without a targeted recipient — can launch a chain of kidney transplants that can number as high as 43.

I spoke with the National Kidney Foundation and learned more about the process. I registered as a potential donor and began extensive series of tests at New York-Presbyterian, which have now concluded with me be being accepted as a kidney donor.

So why am I doing this? Many of our friends and acquaintances have had their share of health challenges in recent years. It is mightily frustrating to watch the pain and suffering and be unable to give any help. I, on the other hand, am in perfect health. I have no need for my second kidney, and I appreciate that my actions may greatly benefit the lives of not just the recipients of those kidneys but their entire families. Without it being too much of a stretch, my one wholly redundant organ can potentially change and improve the lives of hundreds of people.

There were 5,355 kidney transplants from living donors last year, and there are over 100,000 people on the wait list right now for a kidney. The operation is several hours. They start about 3 a.m. in order to catch the morning flights around the country, particularly Los Angeles. L.A. does more transplants than any place in the country, and New York-Presbyterian does the most east of the Mississippi. They’ll have me walking that same day, and I should stay two days in the hospital. I’ll be uncomfortable for two weeks, and fully recovered after four weeks. The operation is laparoscopic, with a single incision in the abdomen. I’ve been working hard with my trainer on my abs.

My advocate tells me that because I am blood type O, a universal donor and an altruistic donor, I will light up computer screens across the country when they list me tomorrow. I am happy to report that Mom is fully on board with this. I could go on for a while, but I think you have the picture. If you have interest in hearing the podcast that inspired me, you can find it here and the short Freakonomics blog on the subject here. Let me know if you have any questions.

Love you all, Dad.

The left kidney that Brooks donated wound up launching a three-recipient chain.

BROOKS: I knew nothing about my recipient until the day of the surgery when I was told that it was a 37-year-old female in Denver area and that she was very, very sick and unlikely to find a donor anytime soon. And that this was a real one-in-a-million match.

DUBNER: Did you know anything about the cause of her illness? And would that have mattered to you if you did know?

BROOKS: No, I had no idea.

DUBNER: Look, you’re not getting paid; you might get thanked, you might not get thanked. You’re doing this for your own set of reasons. Was it important to you that that person appreciate those reasons, or appreciate you? Or did it not really work that way for you?

BROOKS: This is where the leverage comes in. They ask that same question in the initial stages in a little bit different way. What they ask is, “If something happens to your recipient, how upset are you going to be?” Quite frankly, my answer was, “This is multiple people who are getting a transplant because of what I’m doing. And if one of them doesn’t work out, I’m terribly sorry, but it’s going to change the lives for all the others.”

DUBNER: So Ned, you learned a little bit about your recipient, and from what I understand, you’ve been in contact — you’ve received a letter from her — is that right? Expressing her thanks?

BROOKS: The way this works is I go through my advocate at the hospital writing a letter to the recipient that goes through the advocate at her hospital to her. Then if she chooses to do so, she comes back to me with whatever she wants to say. And then through the advocates I go back and disclose my identification, then she does that back to me if she wants to. And that’s the way it worked. And we’ve exchanged emails. And I’ve gotten Christmas cards and such from her family, and so forth.

DUBNER: So you haven’t met with her or spoken with her by phone?

BROOKS: I have not met or spoken to her.

DUBNER: OK so, here’s the story. I believe that if technology has served us well that she’s on the other line right now. Danielle from Centennial, Colorado.

BROOKS: Oh my god! I’ve not spoken to her yet! This would be great.

DUBNER: Danielle, can you hear us? This is Stephen Dubner.

DANIELLE SHAFFER: Hi, I can hear you guys.

BROOKS: It’s Ned.

SHAFFER: Hi Ned.

BROOKS: Hi.

SHAFFER: How are you doing?

BROOKS: I’m doing great.

SHAFFER: Good, good. This is exciting.

BROOKS: This is very exciting. It’s great to hear your voice. How are you feeling?

SHAFFER: I’m doing good! I’m feeling real good. Lately it’s been a struggle since the surgery but I’m doing good. A lot better than I was.

BROOKS: Are you on lots of meds?

SHAFFER: Yeah, unfortunately, I’ll have to be on a ton of meds for probably the rest of my life.

DUBNER: Hey Danielle, this is Stephen. Can you tell us a bit about what led to your need for the kidney?

SHAFFER: Sure, sure. It all started October 8, 2014. I had received a call from my doctor saying that my blood work had come back — I’d gone to my regular doctor just because I was having a severe headache that wouldn’t go away. And so they did some blood work, they called me the next day and said, “You need to get to the hospital immediately.” They were telling me creatinine was at a 12 and I had no idea what that was. And so, I went to the hospital and was immediately hospitalized for the next 15 days, getting biopsies and MRIs and plasma freezes and dialysis and getting all these tubes put in my neck and chest. It just all happened so fast. To this day, they still don’t have any reason. It happened three weeks after I had my son but they don’t want to associate it to that. So they really have no answers of why this all happened to me.

DUBNER: And what was your, a) I guess, prognosis? Did they think that you would survive? And what was your prognosis for getting a donated kidney?

SHAFFER: Well, when I was hospitalized and they had no answers, and they were functioning a small part, but they said that they were failing. But they had hope — since they really had no idea what was going on with me — that they would kind of kick back in and restart themselves. So we kind of just waited and I started dialysis and everything. And while we were waiting for those next couple months, I actually tried acupuncture for, you know, organ treatment, specifically for that. You know, I was trying everything. And I said, you know what, I’m not going to wait any longer for them to restart. I better get on this transplant list now. So, come January of 2015, I started the process of getting on the transplant list. And starting there.

DUBNER: And what were you told about how long that would likely take you to get you a donated kidney?

SHAFFER: Well, it came back that I had antibodies in my blood from blood transfusions that I had during the hospitalization, and from having children they said I had created all these antibodies. So it made me a very rare match for — I wasn’t a match to any of my family and so they said because of my rare antibodies I could possibly be on the list five or six years. So that’s the kind of range they gave me back in January of 2015. That, I was looking at five-to-six years being on dialysis.

DUBNER: Wow. How long was it before you heard that there was a donor?

SHAFFER: Well, it was probably come May of 2015 that I started getting word. Me and my father, we decided since I was having such a hard time and nobody in my family matched with me, my father really wanted to donate on my behalf. So we heard about the paired-donor program through the hospital and he wanted to donate his kidney on my behalf. So, it was probably around May of 2015 that we started the chain process. I had several chains lined up throughout the summer of 2015 but it kept falling through due to scheduling with some part of the chain — it kept falling through. So I had many chains lined up throughout the summer, and it was finally in August that we found — I guess Ned was matched to me, and we got the surgery date of September 22, and it kind of just happened really quickly from there.

DUBNER: Way to go, Ned.

BROOKS: Thanks.

DUBNER: What’s it feel like for you, Ned, hearing Danielle talk now? She’s obviously in a much better situation today with your kidney in her than she would be without. So what’s that feel like to hear her on the other end of the line?

BROOKS: It’s emotionally very powerful. It means a lot. A great deal.

SHAFFER: Yeah, it was a real struggle going through dialysis in the last year. I had to do four hours of treatment three days a week. So basically it took 15 hours out of my time every week. And I would go into a dialysis center. And, the first thing you do is you get checked in and they do your blood pressure, your weight, your temperature. They go through all your symptoms that you’re feeling. There’s really no privacy when they’re doing that — I mean, the next patient is five feet from you in their chair, and you’re talking about all of your bodily functions that are not going well for you with all the medications you’re taking and everything and it takes away a little bit of your integrity having to do that so publicly. And then, just to sit there for four hours doing nothing. I can’t get up, I can’t move. My blood is just sitting there, you’re watching your blood go through this machine and it’s really, really depressing. And, it was hard for me. I mean, I cried the first couple times just because I would sit there and I’d look around and I was the youngest, you know obviously, in the whole building. I was 37 years old. And I was the only one driving myself there. It’s just a really hard and depressing time to spend in your day. It was really hard for me to do because I have two small children as well.

DUBNER: It’s remarkable. You say you were crying then. Now you sound so strong. Ned’s on the other line blubbering there. I’m on the border, holding it together. So…

SHAFFER: It’s emotional every time I talk about my story too, so.

DUBNER: I’m curious, you said that your dad had entered the donor chain. Did he end up giving a kidney, and if so does he know who the recipient was?

SHAFFER: He ended up giving his kidney. And all we really know is that it went to Connecticut over there where Ned is, and we have not heard from the recipients on that end.

DUBNER: I have a copy of the letter that you wrote to your donor. It’s unclear to me whether you knew exactly who Ned was at this time. It begins, “To my wonderful kidney donor, I don’t even know where to begin.” And I’ve already started to cry. Sorry. I have nothing to do with either of you and I’m crying. OK. So, but then, toward the end, you write, “Just to let you know, your kidney is doing awesome, and I’m already getting my energy back.” Danielle, what’s it like to have this guy Ned’s kidney inside of you? Do you feel whole again? Do you feel different?

SHAFFER: You know, it was amazing because the very next day after surgery, I felt incredible. I felt 100 percent different. I didn’t feel any of the symptoms that I was having before with the illness and the nausea and the anxiety and everything I was going through. I immediately felt better. My body felt better, and yeah. I was eating and drinking the foods and liquids I was restricted to for so long, and it’s just — I do have the energy again. It’s amazing how much better I feel. And I don’t know if he had any food habits that I’ve picked up, but.

BROOKS: How do you feel about single-malt scotch?

SHAFFER: You know, I haven’t had the craving for any scotch. It is funny because we joke about that with my dad because he’s a single-malt scotch drinker too, and we say, “Oh, that person’s probably craving it now.”

DUBNER: Well, Danielle, I’m glad you’re doing better and I hope you continue to do even better.

SHAFFER: Yes, thank you so much. And Ned, thank you so much for everything you’ve done for me and my family.

BROOKS: No need to thank me anymore. Thank you for being such a great recipient, and we’ll be in touch.

SHAFFER: Yes, we will. Thank you.

DUBNER: Danielle, thanks for jumping on the phone with us. Bye bye.

SHAFFER: Alright bye guys.

DUBNER: Bye. Well, Ned, how do you feel now? See what you’ve done now?

BROOKS: Boy, I was shaking in here. This is really something. She’s a great person.

DUBNER: Well, I know you didn’t do it for the thanks, but thanks!

BROOKS: My pleasure.

Ned Brooks, inspired by his own experience — and the huge need for more kidney donations — is starting an organization to help build more altruistic kidney-donor chains. It’s called Donor to Donor."

1 comment:

I donated a kidney to a friend Thursday. I'm 70, and in good health, probably due to being mainly vegetarian, having a dog, and not overstressing. Walks are good!

Being O+ & having had no transfusions helped me be a match.

Undirected donations are the best, and the most abstract. You do not see the suffering of the dialysis patient directly. Dialysis wears you down. It cuts your life expectancy in half. It makes you weaker and weaker. Your diet is extremely restricted. Travel is very difficult.

Even after just 5 days, I can see the difference in my friend. He has more energy, is more alert, is much happier!